Palliative Care - Waiting To Die

• "Palliative care is an interdisciplinary model that focuses on the comprehensive management of the physical, psychological, social and spiritual needs of patients with all types of progressive, incurable illnesses and their families. Palliative care ensures that values and decisions are respected; comfort is a priority; practical needs are addressed; psychosocial and spiritual distress is managed; and opportunities are available for growth and resolution."

Charles was transferred to Fort Roots VA Hospital, North Little Rock (NLR), Arkansas last Thursday. We grew up in NLR and Fort Roots was always known as the "Nut House" where insane people (veterans) were kept. How it came to be known as this is hard to say but the stigma still holds true in Charles' heart. Fort Roots was spoken of in whispers and images of decrepit, slobbering, child-murdering maniacs made us steer far clear of the old buildings that always looked vacated to me. Jokes and threats of "be careful or you will be sent to Fort Roots" were common.

Now the jokes are no longer funny or just scary stories to make children obey or stay away. The reality of Fort Roots in our lives today enlivens those childhood horror stories and engulfs us like the glowing green gelatinous blob devouring everything in its path in those old 50's horror movies. Devouring Charles. Devouring and suffocating our hopes.

• "Palliative care is the active total care of patients whose disease is not responsive to curative treatment. Control of pain, of other symptoms, and of psychological, social and spiritual problems is paramount. The goal of palliative care is the achievement of the best possible quality of life for patients and their families."--World Health Organization. Technical Report Series 804, Cancer Pain and Palliative Care. Geneva: World Health Organization 1990:11.

Charles was distraught to find out about the plan to transfer him to Fort Roots because all he could think about was that it was the end of the road for him and that he may never come out alive. That he may never go home again. He fretted over it daily and pleaded with family members to not let him die in the hospital. To promise him that. And not to die alone.

I tried to hold to that promise and lived in the hospital 24 hours a day most of my stay there, even sleeping by his side. A few nights I shared with my "little sister", Teresa who was down from Indianapolis but the sharing did little to ease the pain of watching what was transpiring with him. Sleep is impossible whenever you are awaken every few minutes either by alarms on the IV pumps, or nurses giving scheduled meds or pouring more anti-nausea and liquefied morphine into the tube protruding from his emaciated stomach, or by the wet gagging upheavals of the mucositis that threatens to choke him and drown him in his own fluids.

At some point during one of those agonizing time slowly slipping through molasses nights, I realized my own limitations, commitments and life responsibilities would not allow me to be the one who ensured his requests were met. I too was bound to fail Charles when he might be needing me the most.

• Palliative care specialists typically work in teams and usually are needed when the disease is advanced, life expectancy is short, and problems become complex and more urgent. In practice, these problems most often relate to uncontrolled symptoms, conflicted or unclear goals of care, distress related to the process of dying, and increasing family burden.

When Googling Fort Roots I was hard-pressed to come up with much on what is really going on inside. Charles is miserable and describes it as "the pits". He says, "It's a f***ing nursing home!" and gets angry with me when I ask him about the care he's receiving versus the care he was receiving in the primary care facility he was in while I was with him in Little Rock. He gets angry because he feels helpless and trapped. I get angry because I am helpless and trapped.

I feel guilt that I should have stayed just one more day to have been with him as he transferred to Fort Roots so I could see firsthand the difference between the two facilities. So I could have cornered his doctors and made them state explicitly if he was now considered to be under palliative care. If now, we are all just waiting for him to die without hope of a miracle recovery.

• The dying patient requires medical care for a variety of physical symptoms and needs. Medical treatment is now focused on making the patient as comfortable as possible. This treatment includes managing pain, fatigue, shortness of breath, and nausea and vomiting. The medical team should monitor the patient's treatment plan closely and review it to make sure that it is in the patient's best interests and in line with the goals of the treatment plan. This process may involve revising the drug regimen and discontinuing any unnecessary medications, deciding whether to continue nutrition, determining whether hydration (giving fluids) is appropriate, and providing comfort without artificial ventilation. The patient should be monitored by a nurse who can help to make him/her more comfortable by treating pressure sores (bedsores), bladder and bowel needs, immobility, and secretions. In some cases, when symptoms are unbearable and cannot be relieved, sedation may be offered to ease patient suffering.

That pretty much sums it up where we are today. At Fort Roots waiting. The one hope that I hold out for is the promise of Charles' primary care oncologist that told him that if it ("it" being death) became an inevitability then he would release him (at Charles' request) with pain medications to keep him comfortable and send him home. He told him that right in front of the entire family. Promised him.

Why do I have the feeling the doctor is lying? Why do I, in a way, hope he is lying? Why do I feel that my family doesn?t want Charles to come home even though they all promised Charles they would support that and not let him die in the hospital? Maybe because, in private, they have all reneged and told me they can't handle Charles being at home and dying and no one can care for him as he will need.

Who am I to bring into question or expose their secret (secret at least to Charles) whenever I myself cannot afford (in time and money) to be there to take care of him the way he will need to be taken care of at the end. Who am I to sanctimoniously criticize or question their love or devotion of Charles by their unwillingness to sacrifice and watch him die in his or their home? I can't. I simply can't, though it angers me to know I am hiding from him the obvious truth of the broken promises made. But I can't because I too am guilty and realize that not all promises can be kept no matter how sincerely pledged.